I’ve made mention of a medical diagnoses in several of my posts and promised more details at a later time. I’ve pushed it off, because honestly I’m afraid this post won’t do the disease and all those who suffer from it justice. However, it’s Interstitial Cystitis Awareness Month and if nothing else I hope after you read this you’re at least a little more informed, even if it’s from someone that is still learning herself.
The following will contain some personal female medical information. If you’re not wanting to read that kind of content, I’ll catch ya next time.
I’ll start by sharing a little bit of my experience. This is one I’m still processing. I feel the anxiety and panic creeping in just getting ready to type this, so if it’s little disjointed, forgive me.
For years I would get what I thought has a horrible yeast infection that would then turn into BV and it would take MONTHS of medications to get it under control. It got to the point where I could just call my doctor and she would start sending rounds of meds in for me. After a good 5-6 years of this pattern my doctor decided to give me an exam and take a swab to see the specific bacteria or yeast so she could treat more accutely and hopefully end this toturous cycle I was stuck in. To my surprise, everything came back clear. The doctor said everything looked physically normal and all my results were clear. I was also having awful intense periods so my doctor referred me to a gynecologist.
At the gynecologist based on symptoms, my doctor felt very certain I had endometriosis. She said she likes to avoid surgery at all costs and that a good way to confirm her suspicions was to take hormonal birth control. As far as the chronic infections go, she did another swab that was more complex than my first doctor. Those results came back all clear as well. She said she thinks I needed to stop all the meds and give everything a change to balance out before we do anything further.
After that, things cleared up on their own! I waited until the appropriate time and started the birth control. It took my body a little time to adjust but it worked beautifully and things started to get a little better. For about two weeks…..
The horrible burning and a new super intense pain started along with the feeling that I had the most monsterous UTI of all time. It also felt like my bladder was literally going to fall out of my body at any moment. It is THE most unsettling feeling. I called my gynecologist back and was able to get in to see her PA.
This was a much different appointment. My urine sample came back totally normal. I was getting really tired of all this pain with continued normal test results. The PA sent it out for a culture just in case. I was then given my first incredibly traumatic pelvic exam. The PA used what felt like a needle and just started jabbing all over my lady parts as I gripped the side of the exam table and tried not to scream out in pain. As she did so, she asked if any areas hurt more than others.
When she was done, she informed me that she thinks I have Interstitial Cystitis and vulvodynia and that I needed to see a urologist. Vulvodynia she explained was a nerve disorder that caused extreme vulva pain. She said the only fix is to take an antidepressant and that the side effects would be pretty rough. She then wished me the best and sent me on my way.
After this appointment I was reeling from that super invasive and unbelievably painful exam along with the possibility of these two new diseases and the thought of taking medication that might quite possibly ruin every aspect of my life that I love. The side effects she mentioned were extreme fatigue and depression among many others. I saw my super active life flash before my eyes and envisioned turning into the sad blob from the Zoloft commercials.
A few days later, my symptoms got significantly worse. I was going to the bathroom about every 5 minutes and the sense of extreme urgency never left. The feeling that my bladder was going to fall out only got stronger and my pelvic pain was at a solid 8-9 constantly. I couldn’t sleep, I couldn’t sit, I was the most miserable I had ever been in my entire life. Through this I was teaching PE two days a week and instructing Jazzercise classes. Looking back, I still don’t know how I managed that but I honestly think continuing to live life was the only thing that kept me sane.
I then got a call from the PA that said my culture came back positive and I did in fact have a UTI and that she was calling in medicine for me. This provided a little relief but honestly not much. I also got a call from the Urologist that it would be over a month before they could get me in. I remember answering that call at work, going into my PE closet and bawling and then pulling myself together so I could teach class. I went through over a month of continued agony and then finally the day came that I got to see the urologist. I had never looked forward to a doctor appointment more! Finally some relief!
The nurse took a urine sample and did an ultrasound of my bladder. Then the urologist came in and said that based on my symptoms she was sure I had interstitial cystitis and vulvodynia as the PA suspected. She then asked me if she put some medicine in my bladder that would help, would I want that? I immediately said yes. I was desperate for any form of relief. Now, looking back I should have known there is only one way to put medicine in the bladder but at the time I was still processing everything before she offered the medicine so I really didn’t know what I was in for, and the doctor didnt tell me. She had to catheterize me to put the medicine in. Remember that intense nerve pain? Well it was all around my urethra. I literally felt like someone shoved a red hot poker at me. I screamed out loud this time as all she prepared me for was “a little pressure”. She got the medicine in and she told me to hold it in for as long as possible.
She then told me she was prescribing amitryptaline (an antidepressant) and handed me a diet sheet. It had listed any and all acidic foods, anything with preservatives or sugar, coffee, alcohol as well as many other things as things I could no longer consume. I asked her if there were any other options as far as treatment goes because the thought of giving up coffee, alcohol, and so many other things just seemed like cruel and unusual punishment. She laughed. LAUGHED. And told me no.
I went to my car, had a panic attack and then went to teach a jazzercise class. The catheter left me in agony for weeks. I tried my best to follow my new diet and starting looking for a support group because I knew I couldn’t handle this on my own. I found nothing local and finally came across one on Facebook that was quite large. I joined and immediately started reading. Posts about getting on disability, having bladder removal surgery, and marriages ending (because this disease effects your sex life in a HUGE way), flashed before my eyes and sent me into another panic. I left sobbing messages to the squad and they encouraged me to get out of that group and give myself some time.
At this point I had also started taking the antidepressant and all the side effects the PA mentioned came out in full force. I ended up having to cut it in half. Several weeks later I ended up in the ER because of this medicine but I’ll save you those details because you didn’t come here to read a novel.
I tried a few medications, all of which had side effects that were as bad as my symptoms. I was trading one form of misery for another and felt like my life was over. I ended up getting back in that Facebook group and it ended up being the thing that made life feel somewhat normal for the first time in months.
I learned about different supplements and things to try that did SO much more than any of my prescriptions without all the nasty side effects. I was FINALLY getting some relief. I learned there was such a thing as acid free coffee and life took a major upswing after that. I learned about a medicine I can take before I eat something acidic that will help cut down pain. I was finally starting to learn how to manage this disease. With ZERO help from a medical professional.
I ended up asking my urologist to refer me to a Pelvic Floor Physical Therapist and that changed my life for the better yet again. A lot of the pain that the doctor referred to as vulvodynia ended up being from pelvic floor disfunction.
Interstitial Cystitis is a hugely under researched disease. Doctors tend to not know what to do with it. I actually saw a screenshot from a medical text book the other day about IC that said the basic symptoms but that no one knows the cause or really a good treatment plan. People seem to get this disease for a lot of different reasons and while a treatment for one patient may be life saving, it might do absolutely nothing for another.
It’s been almost a year now for me and I’d say I’ve got things pretty well managed but unfortunately I had to do it on my own. I haven’t had a pain free day in well over a year. I can’t have a lot of foods on the no-no list still. The meds I’m taking could eventually cause kidney damage. Somewhere between 3 and 8 million women and 1 and 4 million men in the US alone suffer from this disease. We have to do better.
A disease that’s so incredibly personal can be debilitating. It’s humiliating to have to explain to your boss and co workers that you need extra bathroom breaks and many people simply don’t understand or think we’re being dramatic. IC pain is so severe that it is compared to the pain of that of a stage 4 cancer patient. I’ve given birth to 9 lb babies twice and broken bones. That was nothing compared to the pain IC has brought me. Both physically and mentally.
So what is IC exactly? A very simple answer is that it’s tears and lesions in the bladder lining. It’s not unusual for an IC patient to regularly have blood and tissue in their urine. Again, there’s no one cause for this. Is it genetic? Was it caused by an embedded infection or candida overgrowth? Tight pelvic floor can contribute. Maybe a combination of it all.
I hope this post was informative and you learned something new. Maybe it helped you understand a friend, coworker, or family member better. Maybe it brought tears to your eyes because you have a similar story. Wherever you land on this spectrum, please share. We need more research so we can find effective treatment.
You can read more information about IC here.
You can donate to IC research here.
As I said above, September is Insterstitial Cystitis awareness month. Our color is teal and you can check here to see if there’s a walk going on in your community.
If you’ve made it this far. Thank you for reading my story.
